Speakers at the Fibromuscular Dysplasia patient information day at Salford Royal

UK’s first Fibromuscular Dysplasia patient information day held at Salford Royal

TV chef and health campaigner Sally Bee and international expert Professor Alexandre Persu joined patients and clinicians at Salford Royal for the UK’s first patient information day on Fibromuscular Dysplasia (FMD).

The day was aimed at providing an update on the latest treatments and research into FMD, a rare condition that affects the blood vessels.

It causes abnormal growth within the wall of an artery so they can be narrowed (stenosis) or enlarged (aneurysm). FMD can be associated with severe hypertension, stroke, myocardial infarction and end stage renal disease but is still underdiagnosed. It can lead to invasive procedures such as percutaneous angioplasty, reconstructive surgery, or intracranial aneurysm clipping.

Sally has the condition and shared her experiences, which include five heart attacks, with the audience – you can read more on her website https://www.sally-bee.com.

The meeting also heard from Salford Royal Consultant Dr Tina Chrysochou, who spoke about collaboration by UK doctors with a special interest in FMD under the Renal Rare Disease Registry (RADAR). The group aims to raise awareness and provide advice about the best strategy for the diagnosis and management of the condition – patients with FMD in any arterial bed can be uploaded to FMD RADAR

The RADAR FMD group, led by Dr Chrysochou, is currently developing a national epidemiological study to align with the well-established European registry.

 Salford Royal’s Dr Martin Punter and Dr Amit Herwadkar spoke about the support neurologists and neuro-radiologists can offer and Professor David Adlam, from the University of Leicester, gave an overview of the latest research into spontaneous coronary artery dissection (SCAD), another rare condition that occurs when there is a tear in the wall of an artery supplying the heart.

This included his latest work showing genetic susceptibility to FMD and SCAD, with the same genetic factor being associated with an increased risk of FMD, cervical artery dissection, SCAD and migraine.

Dr ‘Bean’ Dhaun, consultant nephrologist from Edinburgh, shared a case study on an unusual presentation of FMD to highlight how this condition can present in multiple ways, and how clinicians should consider FMD when cardiovascular events occur without the traditional risk factors or atherosclerosis.

The day ended with a workshop where patients and carers agreed a wish list for management within clinical services and research ideas for FMD in the UK.

Kidney Research UK and Kidney Care UK sponsored the event, including supporting filming of the presentations which will be made publically available.